Debate contribution: Respite Provision for Adults with Learning Difficulties, Complex Needs and Challenging Behaviour

Debate contribution by Mr Alan Robinson on 21 October 2024.

MLA

Mr Alan Robinson

Party at the time

Democratic Unionist Party

Date

21 October 2024

Type

Debate contribution

Business

Private Members' Business

Heading

Respite Provision for Adults with Learning Difficulties, Complex Needs and Challenging Behaviour

Assembly identifier

Official Report component 4604242

Read the official Assembly record

Text

My party certainly supports the thrust of the main motion, but we felt that it was important to include the issue of respite services being removed when families move from one trust area to another. Whilst availability of respite provision is a problem across the Province, there are also regional inequalities between health and social care trusts. There needs to be a step change in how health authorities cooperate. There needs to be a consistent pathway for families to access support regardless of where they live. Often, due to circumstances outside their control, families have to relocate. They should not be disadvantaged for doing so. Equally, service users should not have to uproot or travel inordinate distances to alternative services. Hence, we were keen to amend the motion. Research published last year found that people providing unpaid care for sick or disabled family members or friends saves Northern Ireland's health service £5·8 billion each year. In my constituency, which spans two trust areas, the estimated value of unpaid care per year in the Northern Health and Social Care Trust is £1·3 billion; in the Western Health and Social Care Trust, it is estimated at £800 million. The least that carers deserve is reliable access to adequate, high-quality respite services, allowing adults and children to be cared for in a safe and secure environment and their families to have a break from caring responsibilities. If it is deemed the right course of action to separate elective and non-elective surgery and care, the same principle must be applied to how we deliver respite and short break provision for hard-pressed families across the Province. We need those services to be protected. The 'Spotlight' has certainly been shone on the wider issue since the recent BBC documentary that highlighted the pressures faced by families who struggle to cope with children who have complex additional needs. No one could be unmoved by the mother who appeared in that documentary and said:

"I left my son at school so he'd be taken into care."

That mother had spent two years pleading for support from her local health trust. We are all aware of cases of mothers, fathers and, indeed, grandparents struggling to cope with children and young adults in their homes. They are children with severe learning difficulties and various complex behavioural needs. I am sure that most of us in the Chamber take for granted the ability to go to our local shop, to go for a walk, to have a full night's sleep, to go on holiday or even to relax in the safety and tranquillity of our home. Little of that is possible for carers. Having dealt with issues in my constituency office, I know that trusts try to bridge the gaps, but they are pushing against storm surge tides, under intense pressure, and so many people fall through the many cracks due to the combination of facilities being repurposed for emergency care, staffing and recruitment, with that and all else being made worse by the long-term effects of the COVID pandemic. When trusts provide direct payments to families to arrange their own care, families struggle to find suitable people to care for their child. I cite my constituency case of a mother of a boy with very severe complex needs. She posts a weekly advert on her Facebook account and asks the public to share her appeal for a carer and personal assistant to look after her boy. It is painful to see such posts. Sometimes, children are just too challenging, and families cannot find a carer willing to take on that role. The eyes are often referred to as the windows to the soul. When you look into the eyes of those parents, you will see that, while they adore their children with every bone in their body, they are broken. They are not living; they are just existing as human beings. A recent House of Commons research paper states:

"there is growing evidence that the demands of caring are increasingly impacting carers' own physical and mental health."

We heard at Professor Bengoa's conference about social determinants of health. Here is one: unpaid carers dedicate their lives to looking after vulnerable family members, and they often provide valuable care at great personal and financial cost. They cannot do it alone. They need and deserve regular, reliable breaks: time to rest, recharge and take care of their own physical and mental well-being. We must always remember that, without the support of unpaid carers, the health and social care system would collapse.

The demand for the services increases every year, and we see more children with learning difficulties, complex needs and challenging behaviours transitioning into adult care services. We must ensure that the support systems are in place to grow and adapt the provision to meet the needs of that increasing population.

Sadly, our current respite provision is failing to keep pace with demand. Families are being left without adequate support, and carers are burning out at an alarming rate. It is important to recognise the hard work and dedication of the staff in the facilities that provide respite care. I think of some in my constituency, such as Benbradagh Resource Centre, where the staff are unsung heroes who work in situations that are, at times, incredibly challenging. They are stretched thin and are working in environments that are underfunded and overburdened. They need support as much as the carers and individuals whom they serve. On the lack of adult respite provision, I support the call for a comprehensive plan to ensure forward planning, additional investment and the ring-fencing of those essential services. We need a clear strategic plan to address the shortage of adult respite provision meaningfully. As our population grows and more children with complex needs enter adult services, the appropriate services need to be in place before families and carers reach breaking point. Families need regular and predictable respite care, not ad hoc solutions that leave them in limbo. A sustainable model is a must, and it will offer carers the security of knowing that help is available when it is needed. The Department has a duty of care to the most vulnerable in our society and to their families, who dedicate their lives to supporting them, but, unfortunately, carers in the Province are being forced to sacrifice their own health and well-being due to the lack of respite services. The Minister was recently on record as saying that the situation was not sustainable and that he was determined to see urgent improvements. He confirmed recently that trusts are performing at roughly 80% of their pre-COVID capacity for the respite and short-term break beds that are available to adults with learning disabilities, their parents and carers. I very much look forward to hearing his comments on how he intends to ramp up that capacity to 100% and expand it further in the coming weeks, months and years. The Minister of Health very much needs to finalise and bring forward the learning disability service model. That needs to effectively and appropriately reflect the complexity and changing nature of demand, while increasing dedicated short break and respite provision. I hope that we will hear more about that today.

1,206 words. Text as published by the Northern Ireland Assembly.

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Assessed 21 October 2026 at 11:26 UTC by jev-1.13.0 (requested as typesafe/jev) under rubric 2026.10-r9, methodology 1.9.

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